Drug holiday over, today I started taking Letrozole again. At night this time. Don't know that it will make any difference but worth a try.If/when (she said optimistically) the side effects return, I'll start my curcumin trial.It's been really really good to be pain (and dandruff) free for a few weeks. I feel it's given me a boost, and more strength to continue.If the side effects don't settle down my oncologist was quite keen to put me onto Tamoxifen. From what I've read here I'm not so sure. Better the devil you know...?

Okay...had my appointment with the onc yesterday. He was running late and called me to his office and went back inside. I struggled to get up after sitting for so long and eventually managed to hobble into his office where he'd obviously been standing waiting for me. His smile turned to concern and he asked me if I had hurt myself to which my response was "Letrozole" which started the discussion of what he termed frustrating side effects. He agrees that the effect is not acceptable because it will either make the treatment unsustainable due to the misery of constant pain or lead to other detrimental effects on my health as it is limiting activity. He did say that I could have a short break but I would prefer to keep that as a next level option given that it's still early days and my cancer developed so quickly and he's happy that I feel that way. I'm guessing that many women are keen to stop the medication, understandably. He did also say that inflammation of the joints is going to cause problems with the soft tissue surrounding them.So, my immediate course of action is a week's worth of prednisolone and see if that helps as I'm unable to take any of the anti-inflammatory pain-killers. I'm also going to have some blood tests to check for any auto-immune arthritis that, although not caused by treatment, could have been brought on by the trauma of treatment. But this is more of a ruling out as he's pretty sure that the arthritis appearing in my hands is Letrozole related.Another possible course of action down the track is changing the hormone therapy drug. I go back to see him in 6 weeks if the prednisolone doesn't help. If it does, then I don't see him for 3 months. All in all, I feel pretty positive about the response. While he's not promising any magic solutions, he's listened to me and not dismissed my concerns. I have some hope that I may get some normal movement back.

Well tonight my left big toe joint is throbbing with pain that is making me wince and draw breath. Fuck it!I saw my psych today. Amongst other things we discussed acceptance, and understanding the trade off that taking the AI has engendered. I explained that while intellectually I completely understood and was willing to put up with an array of difficult side effects for the possibility of a longer life, emotionally I was drumming my feet into the floor screaming "it's not fair". Of course it's not fair, nothing is and I'd rather be having my current difficulties than be more seriously ill. Nonetheless, it's a difficult adjustment and it's taking time for my emotions to catch up with my rational brain.The psych also spoke of the importance of giving space for anger to come out (in a non-destructive way).Sometimes I feel I just want a big 'We understand that even though you're 'better' you're suffering in order to stay that way, you poor brave thing', which is bloody ridiculous because most people are suffering in one way or another and that kind of validation belongs in romantic novels, not real life. Which is why this forum is ace because we all get it here, which provides us with that acknowledgement and validation.You all make this a much less lonely experience. Me and my aching big toe thank you. K xox

@Josephine66 if you reach the end of your tether with letrozole, ask about Aromasin. It's subtly different and my oncologist said it was not his 'first choice' for me, but the other two drugs made my life unbearable. I'm coping a bit better with this AI but I am far from 'normal'. And no, I'm not accepting this a new normal, I'm just not.I too had an AI holiday a couple months ago and was shocked at the impact the drugs were having, thus my discussion about stopping, thus the Aromasin as a last resortA two time winner of the booby prize, I'd have to reach rock bottom to justify ditching what is, for me, the best chance of buying some time. I've been close and may get there again, but at least for the moment I can work, sort of think, and do some of the physical stuff I used to be able to do easily. Yesterday I spent five hours climbing up and down a ladder putting a roof on a carport. Three months ago I was in tears at the thought of that job (which was why it was not done) so I guess there has been an improvement, incremental as it may be. Mind you, I'm stuffed now, still in bed and waiting for the local massage joint to open so I can crawl down there and get someone to try to ease the foot/leg/shoulder/foob situation. Mxx

@Sister @Flaneuse @kmakm u poor things. I get a little joint pain on my drugs. Normally when I first wake up my knuckles are sore so I have to flex them a few times and it takes a minute or so for my joints to loosen up. I have nothing like the terrible pain and debilitation u all have though. I can completely understand feeling like giving it up. Such a tough thing that what is prolonging lives also causes such a downgrade in the quality of it. I struggle a little emotionally like u Kate - I understand logically that the treatment I have had and the medication are necessary evils and I would much rather above ground than below it but sometimes I yearn for the days when I could wear a lower cut dress or top, it didn’t take me ages to for a particular word to come to mind (I have had to resort to googling sometimes) and the fact that some muscles just feel like they will never recover and get their strength back. Very minor things compared to what some people are doing through I know. Big hugs ladies.

No worries! Personally I have butter over margarine and I prefer full fat to low fat products! It is about our own taste buds and choices and for me I have always had a good cholesterol reading along with my other levels. I was unlucky enough that a side effect of Letrozole was a high level of cholesterol. Now I am not back to the 3 that I was years ago but a 5 which is within the Heart Foundation health guidelines.When I was diagnosed I found myself having a heightened awareness of my health and all the variables that go with it. Just this week I have had a multitude of tests including an ECG and I am pleased to know that everything is ticking along as it should.

After a break, Letrozole, continued...

328 Replies

arpie
Member
7 years ago
All good at my Appt, @Mjheke - my surgeon was very happy with how my surgery & rads turned out ..... and I don't see him again til same time next year - unless I get concerned about anything. I didn't end up giving him his copy! LOL I will definitely take it to the Onc tho - as it was mainly relating to my side effects!! He has suggested I try Tamoxifen (which has been around for decades!)

So pleased you are feeling better xxx
Mjheke
Member
7 years ago
Thanks all! I guess you are right not to preempt anything and just see how goes. I will be positive that all will be fine! I am finally feeling good after finishing radiation 3 weeks ago. First time in months. 😊
Sister
Member
7 years ago
Yes @Mjheke Cross the bridge ONLY if you come to it.
Flaneuse
Member
7 years ago
@arpie Good idea to take two copies. I ticked in pencil all the side effects I had out of the list but I didn't think to take a copy for the oncologist when I went. All the best with the consultation.
arpie
Member
7 years ago
I will be talking to my surgeon tomorrow about my 1% less chance of recurrence on my Exemestane tabs ..... even tho he isnt an onc ..... I have printed off all my side effects, one for him, one for me! Then will take the same to my onc as well at my next appt Methinks i am leaning towards stopping too.
Afraser
Member
7 years ago
6 years in @Mjheke and I have no letrozole pains, aches, flushes or stiffness. The creaky knees were there before I started! But are no worse. I do have some other side effects but as everyone says, different people, different reactions. Not surprisingly, those with difficult symptoms speak out, if only to discover what someone else has tried that might help them. But given the variability of side effects, it's wise to give it a shot first and see how you go. Best wishes.
kmakm
Member
7 years ago
@Mjheke It's different for everyone Michelle, but on Letrozole I started on a Friday and on Monday morning I woke with sore ankles. Slowly over the next few weeks, other stiffness and pain arrived. Four weeks in the hot flushes intensified dramatically and my thumb/hand pain began.

I took it for six months and then had a month off. Everything has returned since I resumed but the thumb/hand pain is not as bad as it was.

I'll cross my fingers and hope that you are one of the lucky ones. K xox
Zoffiel
Member
7 years ago
What the others said @Mjheke It might not happen and hypervigilance because of someone else's experience will do your head in. I prefer to think those who have a really crap time with these drugs are the unlucky ones and, though we are noisy about it, we are the minority.
Flaneuse
Member
7 years ago
@Mjheke Yes, you may be lucky. Make the most of every moment and hope they don't arrive.
iserbrown
Member
7 years ago
You maybe lucky and have minimal change
Fingers crossed
Take care

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After a break, Letrozole, continued...

328 Replies

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